scholarly journals Qualidade de vida dos portadores de doença falciforme

2019 ◽  
Vol 13 (2) ◽  
pp. 24
Author(s):  
Kamila Tuany Lacerda Leão Lima ◽  
João Otávio Ferreira Pereira ◽  
Paulo Roberto De Melo Reis ◽  
Keila Correia De Alcântara ◽  
Flávia Melo Rodrigues

RESUMOObjetivo: avaliar a qualidade de vida de portadores de células falciformes atendidos pelo Programa de Anemia Falciforme. Método: trata-se de um estudo quantitativo, descritivo e analítico em 20 portadores de anemia falciforme e 40 indivíduos não falciformes. Coletaram-se os dados por meio de entrevistas no período entre fevereiro a maio de 2015. Avaliou-se a qualidade de vida por meio de SF-36 e WHOQOL-BREF. Apresentaram-se os resultados em forma de tabelas. Resultados: constata-se que a maioria dos pacientes com doença falciforme se declara como negros e castanhos e com baixo nível de escolaridade; os aspectos físicos e a capacidade funcional tiveram os piores resultados e, com a idade, o aspecto físico se torna mais comprometido. Mostrou-se, pelo questionário SF-36, que, entre os escores, os indivíduos com DF apresentavam dor, capacidade funcional, vitalidade, aspectos físicos, emocionais e de saúde mental como os mais prejudicados em relação ao grupo de pacientes sem DF. Conclusão: apresentou-se, pela avaliação WHOQOL-BREF, comprometimento significativo da qualidade de vida física e geral entre os pacientes com DF; já os participantes com doença falciforme sofrem um impacto negativo na qualidade de vida, o que interfere e influencia a saúde dessas pessoas. Descritores: Qualidade de Vida; Doença Crônica; Perfil de Impacto da Doença; Anemia Falciforme; Anemia Hemolítica; Eritrócitos. ABSTRACT Objective: to evaluate the quality of life of sickle cell patients treated by the Sickle Cell Anemia Program. Method: this is a quantitative, descriptive and analytical study in 20 patients with sickle cell anemia and 40 non-sickle individuals. Data was collected through interviews between February and May 2015. Quality of life was evaluated through SF-36 and WHOQOL-BREF. Results were presented in the form of tables. Results: the majority of patients with sickle cell disease declare themselves as black and brown with a low level of schooling; the physical aspects and the functional capacity had the worst results and, with age, the physical aspect becomes more compromised. The SF-36 questionnaire showed that, among the scores, individuals with FD presented pain, functional capacity, vitality, physical, emotional and mental health aspects as the most impaired in relation to the group of patients without SCD. Conclusion: the WHOQOL-BREF evaluation showed a significant impairment of physical and general quality of life among patients with DF; participants with sickle-cell disease have a negative impact on quality of life, which interferes with and influences the health of these people. Descritores: Quality of Life; Chronic Disease; Sickness Impact Profile; Sickle Cell Anemia; Anemia Hemolytic; Erythrocytes.RESUMEN Objetivo: evaluar la calidad de vida de portadores de células falciformes atendidos por el Programa de Anemia Falciforme. Método: se trata de un estudio cuantitativo, descriptivo y analítico en 20 portadores de anemia falciforme y 40 individuos no falciformes. Se recogieron los datos a través de entrevistas en el período entre febrero a mayo de 2015. Se evaluó la calidad de vida por medio de SF-36 y WHOQOL-BREF. Se presentaron los resultados en forma de tablas. Resultados: se constata que la mayoría de los pacientes con enfermedad falciforme se declara como negros y castaños y con bajo nivel de escolaridad; los aspectos físicos y la capacidad funcional tuvieron los peores resultados y, con la edad, el aspecto físico se vuelve más comprometido. Se mostró, por el cuestionario SF-36, que entre los escores, los individuos con DF presentaban dolor, capacidad funcional, vitalidad, aspectos físicos, emocionales y de salud mental como los más perjudicados en relación al grupo de pacientes sin DF. Conclusión: se presentó, por la evaluación WHOQOL-BREF, un compromiso significativo de la calidad de vida física y general entre los pacientes con DF; ya los participantes con enfermedad falciforme sufren un impacto negativo en la calidad de vida, lo que interfiere e influye en la salud de esas personas. Descritores: Calidad de Vida; Enfermedad Crónica; Perfil de Impacto de la Enfermedad; Anemia de Células falciformes; Anemia Hemolítica; Eritrocitos. 

2019 ◽  
Author(s):  
Camila Freitas de Andrade Rodrigues ◽  
Thiago Alves Rodrigues ◽  
Maria do Socorro de Sousa Cartágenes

Abstract OBJECTIVE This study aimed at analysing quality of life (QOL) indicators of patients with sickle cell disease (SCD) in treatment, investigating the epidemiological, socioeconomic and care situation provided to patients with SCD in the State of Maranhão, one of the poorest states of Brazil. METHODS: A cross-sectional study was carried out from March 2018 to February 2019, with the application of a generic quality of life questionnaire, SF-36, to patients attending a referral center for treatment of hemoglobinopathies in the State of Maranhão. 113 patients with SCD were interviewed and sociodemographic data, disease characteristics and laboratory tests (hemogram, foetal haemoglobin, DHL and reticulocytes) were collected. The SF-36 questionnaire was then applied. RESULTS: Most of the 113 patients were female, with a mean age of 26 years, declaring themselves to be of brown colour and living in the interior of the State. Most were unemployed, having low income and low schooling. About 92% were of the SS subtype, the most serious subtype. The percentage of neonatal diagnosis was only 27.4%. Regarding the SF-36 questionnaires, quality of life was classified as poor in relation to the physical component and good in the mental component. The use of hydroxyurea, the only medication approved in Brazil for the control and prevention of pain, promoted an improvement in the physical appearance of patients with SCD, howbeit, with no relation to the prevalence of clinical complications. CONCLUSIONS: The use of the SF-36 generic questionnaire showed impairment in the quality of life in the physical domains of patients with SCD, worsening in cases in which there was delayed diagnosis; in those individuals who claimed to have suffered prejudice; and in patients hospitalised for pain attacks. No deterioration of the mental components was observed. This scenario implies a need for government action sensitive to this public health problem.


Over recent decades, tremendous advances in the prevention, medical treatment, and quality of life issues in children and adolescents surviving cancer have spawned a host of research on pediatric psychosocial oncology. This important volume fulfills the clear need for an up-to-date, comprehensive handbook for practitioners that delineates the most recent research in the field--the first of its kind in over a decade. Over 60 renowned authors have been assembled to provide a thorough presentation of the state-of-the art research and literature, with topics including: -Neuropsychological effects of chemotherapy and radiation therapy -Bone marrow transplantation -Important issues about quality of life during and following treatment -Collaborative research among child-focused psychologists -Standards of psychological care for children and adolescents -Stress and coping in the pediatric cancer experience -The role of family and peer relationships The Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease represents both multidisciplinary and international efforts, an alliance between physicians and parents, and a combination of research and service. With a wealth of information of great interest to patients and their families, this volume will also be a welcome resource to the psychologists, psychiatrists, pediatricians, oncologists, nurses, and social workers who confront these issues as they help children and their families through the treatment, recovery, and grieving processes.


2021 ◽  
pp. 101107
Author(s):  
Rachel Bartlett ◽  
Zachary Ramsay ◽  
Amza Ali ◽  
Justin Grant ◽  
Angela Rankine-Mullings ◽  
...  

2016 ◽  
Vol 147 (12) ◽  
pp. 531-536
Author(s):  
Elena Cela ◽  
Ana G. Vélez ◽  
Alejandra Aguado ◽  
Gabriela Medín ◽  
José M. Bellón ◽  
...  

2015 ◽  
Vol 54 (14) ◽  
pp. 1354-1358 ◽  
Author(s):  
Cristiane Dias Malheiros ◽  
Luanne Lisle ◽  
Marilda Castelar ◽  
Katia Nunes Sá ◽  
Marcos Almeida Matos

2013 ◽  
Vol 20 (2) ◽  
pp. 80-86 ◽  
Author(s):  
H. El-Shinnawy ◽  
T. Goueli ◽  
M. Nasreldin ◽  
A. Meshref

Author(s):  
Turki Alzahrani ◽  
Raed Alzahrani ◽  
Amer Alzahrani ◽  
Abdullah Alzahrani ◽  
Abdu Adawi ◽  
...  

Aims: To gain a better understanding of the quality of life (QoL) of children and impact of this disease on parents QoL. Study Design: Cross-sectional study. Place and Duration of Study: The study was conducted in King Fahd Hospital, Albaha city, Albaha, Saudi Arabia, between March2020 and February 2021. Methodology: We included 95 responses. Two different tools were used for the purpose of this study. PedsQL™ Sickle Cell Disease Module was used to measure health-related quality of life (HRQoL) in healthy children and adolescents and those with acute and chronic health conditions. Moreover, PedsQL™ Family Information Form was completed by caregivers. Median and interquartile range were used for numerical variables since they were skewed. Bivariate analyses were carried out using non-parametrical tests and Pearson correlation. The prediction of QoL was accomplished through multivariate analysis. Results: A total of (95) responses were analyzed. Female respondents were 52.6%. The age median was 12 (IQR=10-14). Mothers represented the most frequent informant 46.3% in this current study. Significant association was found between QoL and certain independent factors, some of which is parental level of education (P< .001) and marital support (P< .001). Conclusion: Sickle cell disease (SCD) is a major condition accounts for a huge burden on variable levels. This study reported that low QoL among children affected by SCD. Higher education and current marital status of the parents were significantly associated with high QoL in SCD patients. Number of workdays affected due to child health was significantly correlated with low QoL.


2018 ◽  
Vol 10 (1) ◽  
Author(s):  
Chetcha Chemegni B ◽  
Kamga Olen JPO ◽  
Um Nyobe LJ ◽  
Ntone Enyime F ◽  
Mbanya D

2004 ◽  
Vol 21 (4) ◽  
pp. 207-213 ◽  
Author(s):  
Kristin A. Stegenga ◽  
Peggy Ward-Smith ◽  
Pamela S. Hinds ◽  
Julie A. Routhieaux ◽  
Gerald M. Woods

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